Epilepsy: What’s Okay to Talk About?

I’m going to try to accomplish two very different things in a single (pretty short) post today:

1. Give you my take on how best to react to people with epilepsy and

2. Convince you that Crossfit is the best thing ever.

I know what you’re thinking: What?! These seem like very disparate subjects, Kate. Why would you attempt to combine the two?

Let me tell you why:

When I had my first seizure, it was at a Crossfit gym. You can read about that seizure here. If you don’t know what Crossfit is, don’t worry. I’m going to go into more detail than you want later. For the moment, think of it as “working out.”

After that first seizure I didn’t go into the gym for a while (ahem, almost 2 months) because I was operating under the misguided idea that epilepsy was something I’d be able to sort out pretty quickly. Just take some meds and get back to my normal stuff.

I stopped doing my everyday things (the gym, hanging out with friends, etc.) so that I could focus all of my mental energy on solving this one problem. Until it became apparent that epilepsy, at least in my case, was not going to be something that went away quickly and quietly so that I could continue as I had before.

At which point, I had to make a decision about whether or not to continue to do Crossfit. Most of Crossfit involves lifting heavy things over your head, possibly in close proximity to others doing the same thing. On the surface of it, not the ideal thing to be doing when you have a seizure. You could get hurt.

But wait… you could get hurt doing pretty much anything if you suddenly lose consciousness and thrash around. Like walking down stairs. Or standing in your kitchen. Or showering. Or petting kittens (okay, maybe not that one…).

If I used the “I could get hurt if…” standard, I would have to stay in bed in my room indefinitely. And for a relatively stubborn and independent person, that’s not an acceptable answer.

So Crossfit (among other things) became somewhat symbolic in my mind. It was something I loved and that I refused to give up simply because there was a chance I could get hurt. I feel the same way about biking, despite two seizure-sparked headers so far (with zero major injuries).

Now the question was: Would they let me keep coming to the gym? I pretty much terrified an entire class of people when I had that first seizure. And, quite frankly, if I were a gym owner where we lift heavy things over our heads, I’d be disinclined to let the girl who has seizures keep coming to class until she got that under absolute control. But then, I’m an accountant. And people who own Crossfit gyms are generally kind of badass. And into empowering people.

Also, like most things in my life for the 8 weeks after my first seizure, I’d refused to actually make this decision. So I’d just been missing classes and hadn’t put my membership on hold or anything. Which meant that in my mind it had gone into the ever-expanding category of “things I’m falling behind at or have to deal with.”

I finally emailed my coach Hannah at TwinTown Crossfit to let her know that I was going to try to come back to classes. And without my asking she retroactively fixed it so my membership got extended for the 8 weeks that I’d been out and encouraged me to get back in the gym.

And it was such an unexpected relief. It sounds weird, but reworking all those little details (gym, car, grocery store, etc.) can be way more stressful than the actual health concerns of having seizures. I had started to have this attitude that everything was going to be harder now so when she made it so easy, it was this huge unexpected relief. Yes…something was easy! Score!

So what am I getting at here? In my experience so far, two of the most helpful things you can do for people in your life that have any chronic condition are (1) let them set their own limits and (2) be flexible with them, especially when it costs you nothing (or very little).

This Crossfit story illustrates both of these.

First, Hannah never once asked me whether it was safe for me to be in the gym, even though that’s the obvious question we’d all have in her position. Intentionally or unintentionally, by not asking the question she made me feel like she was trusting my judgement in this area. I did send her and the other trainers some info on epilepsy and what to do in case of a seizure. I’m also very careful about where I position myself in class (e.g. near an open space in case of a seizure). But other that, we’re just rolling with it.

A slight caveat here: If you’re close friends with someone and you think they’re pushing dangerous boundaries, you should obviously say something. But try to use the same standard you would for anything else. Like if I were doing coke, I’d hope you’d say something. Or drinking and driving. Obviously dangerous.

Use your best judgement here. And try to think about the alternatives first. Like if you think it’s dangerous for me to ride my bike… try to think about what you’d do if you couldn’t drive and someone suggested that you also not ride your bike. How would you feel? Are there logical alternatives available?

Because even though it might be your first conversation about this with the person, it’s not the first conversation they’ve had about it. So you’re having an initial conversation. But they’re hearing what you say AND what the 10 people before you have said. And (at least to me) after going through weeks of “you can no longer do x” types of conversations (both with others and internally), these conversations kind of feel like someone poking a really sore bruise. After 10 other people just poked it. So say something if you think it needs to be said, but try to be gentle. And try to think about what you’d do if your roles were reversed before you just jump right in. 

Okay, end of caveat / detour. Back to point two. Be flexible, especially when it costs you nothing (or very little). Hannah was super flexible with me when she didn’t have to be. It would have been perfectly within her rights to just express some sympathy and remind me when my membership would be up. But she didn’t. She had the authority to be flexible so she did. And it probably did cost them something because they’re essentially letting me use the gym for free for two extra months (thanks Teddy!). But she didn’t make me feel like it was a hassle to her.

Okay… I just used way more words on point one (how best to treat people who tell you they have epilepsy). So my description of Crossfit is going to get pushed to tomorrow. Come back to hear about what all the cool kids are doing…

3 thoughts on “Epilepsy: What’s Okay to Talk About?

  1. Fitness and epilepsy CAN mix, nice to see someone posting about it with confidence. I’m also into sport, play rugby and follow west side bar bell training principles, I was a little fed up of consultants giving me advice about “errr, better avoid that one”. Keep it up! NP

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